Living with a colostomy

It can be difficult to adjust to a colostomy at first, but it doesn't mean you can't have a full and active life.

You may find the following information useful if you have a colostomy, or are due to have one in the near future.

Colostomy equipment

After a colostomy is formed, the opening in your abdomen (known as the stoma) produces digestive waste in the form of faeces. The consistency of your faeces depends on which part of your colon is diverted, as well as your diet and fluid intake.

A colostomy pouch will usually be required to collect your faeces. These pouches often need to be removed and replaced when full (usually one to three times a day), although drainable pouches that only need to be replaced every one or two days may be used if you have particularly loose faeces.

There's a wide range of colostomy appliances available, including:

a one-piece pouch – the bag and flange (part that sticks to your skin) are joined together; the appliance is removed when full and disposed of

a two-piece pouch – the bag and flange are separate, but can be connected; the flange can be left on your skin for several days and the bag removed and disposed of several times a day

If you produce faeces in a regular and predictable pattern, you may not always need to wear a colostomy bag. However, as occasional leakages can occur, it's recommended that you wear a small stoma cap.

A specialist stoma nurse, who usually sees you before and after the colostomy is formed, will help you choose the most suitable appliance.

To help reduce skin irritation, colostomy appliances are made from hypoallergenic (non-allergic) material, and contain special filters that ensure the appliance doesn't release any unpleasant odours.

There are additional products that can make living with a colostomy more convenient, including:

support belts and girdles

deodorisers that can be inserted into your appliance

protective skin wipes

adhesive remover sprays

protective stoma rings

specially designed underwear and swimwear

Your stoma care nurse can advise you on the most appropriate equipment to manage your colostomy successfully.

Ordering and paying for appliances

You'll be given an initial supply of colostomy appliances before you leave hospital, as well as your prescription information. You should let your GP know your prescription information, so they can make a note of it in your medical records and issue prescriptions in the future.

Your prescription can either be taken to the chemist or sent to a specialist supplier, who will deliver the appliances. There's no need to stockpile supplies, but it's recommended that you order more appliances while you still have plenty left, so you don't run out.

You won't have to pay prescription charges for permanent colostomy equipment. However, you'll have to pay prescription charges for a temporary colostomy, unless you're over 60 years old.

Irrigation

Irrigation is an alternative to wearing a colostomy appliance. It involves washing out your colon with water either every day or every other day.

This involves gently inserting a small device into your stoma and attaching it to a bag full of water and an irrigation sleeve, which acts in a similar way to a colostomy pouch.

You slowly move water into your colon, so it washes it out and moves the stools into the irrigation sleeve. The equipment can be disposed of once the process is complete. A cap is used to cover your stoma in between irrigations.

Advantages of irrigation include:

you choose when you want to perform irrigation

you don't have to wear a colostomy appliance (but may have to wear a small cap)

Diet

In the first few weeks after having a colostomy, it's likely that you'll be put on a low-fibre diet. This is because having a high-fibre diet can increase the size of your stools, which can cause the bowel to become temporarily blocked. After around eight weeks, you'll usually be able to resume a normal diet.

As you recover, you can start to eat a healthy, balanced diet that includes plenty of fresh fruit and vegetables.

Smell and wind

Many people worry that their colostomy will give off a smell that others will notice.

All modern appliances have air filters with charcoal in them, which neutralises the smell. Most people will be aware of the smell of their colostomy, because it's their own body. However, someone standing next to you won't be able to smell the stoma.

Immediately after your surgery, your colostomy will make excess wind and noise. This will slowly reduce as your bowel recovers.

Your stoma nurse can advise on products you can use to help reduce any smell, and dietary advice to reduce wind.

Medication

Many medicines are designed to dissolve slowly in your digestive system. Having a colostomy shouldn't alter the effectiveness of your usual medication. If you do notice any tablets in your appliance, notify your pharmacist or GP who will recommend an alternative medication for you to take.

Exercise

In the weeks following surgery, it's usually recommended you do some gentle exercise to help recovery.

How well you recover will determine how much exercise you can do. If you feel any pain, stop immediately.

All colostomy bags are waterproof, so you can go swimming.

Work

Once your bowel has healed, there's no reason why you can't return to work. If your job is particularly strenuous and involves a lot of heavy lifting, you may need to wear a support belt or a girdle. Your stoma nurse can advise about this.

It's likely to take several months before you're ready to return to work. However, it all depends on how well you recover and the type of work you do. When you do return, you're likely to find it very tiring. It's a good idea to discuss potential options with your employer before having a colostomy operation.

Some employers may be happy to provide a degree of flexibility, such as allowing you to work part-time or at home, until your strength improves. Your employer may also be able to provide additional support, such as giving you access to changing facilities or adjusting your work responsibilities so you don't have to do lots of heavy lifting.

You don't have to tell your work colleagues about your colostomy (unless you want to). Some people find it's a good idea to tell one person in the workplace, in case they need any support or advice.

Travel

There's no reason why you can't travel freely when you've had a colostomy, although you'll probably need extra time when planning your journey.

Most stoma companies have a small information leaflet you can carry with you at all times, available in several different languages.

Your stoma nurse can give you advice about travelling with a stoma. It's recommended that you have travel insurance.

One essential item for people with a colostomy is a RADAR key. This provides you with access to public disabled toilets, so you can change your colostomy appliance when you need to.

You can get a RADAR key by contacting the Colostomy Association, which is a leading UK charity and support group for people with a colostomy.

When travelling abroad, it's a good idea to take plenty of colostomy supplies with you, because you may have difficulty getting hold of them in another country.

Sex

There are several practical issues that could have an impact on your sex life and your relationships.

Women

Women who have had their rectum removed may find that having sex in the traditional "missionary position" is painful, because the rectum no longer supports the vagina during sex. Trying different positions may help.

After surgery, many women also find their vagina is much drier, which can make sex uncomfortable. Applying a lubricating jelly before having sex may help.

Having weight placed on your stoma during sex can be painful, so you may want to avoid positions that could cause pain. Alternatively, you could protect the stoma with a cushion or pillow.

Your stoma nurse can give you more advice.

Men

Following a colostomy, some men find the blood supply and nerve endings to their penis have become damaged. This can make it difficult getting or maintaining an erection (erectile dysfunction).

Other sex-related issues

Aside from practical issues, you may be concerned about body image, self-confidence and how your partner may react to your colostomy, which can also have an impact on your sex life.

It's important to stress that many people who have a colostomy enjoy a good sex life, although it can take several months to build up the confidence and trust to make this possible.

If you have a long-term partner, you may want to ask them if they want to see your stoma and colostomy equipment. Some people’s partners want to take an interest, but others may find it too upsetting, at least in the short term. There is no right or wrong way to react, so try not to take a refusal as a personal rejection.

If the appearance of your stoma and colostomy equipment is off-putting during sex, you can always cover them with a nightgown or boxer shorts.

Other tips that may improve your sex life include:

changing your appliance before having sex

changing your appliance to a small stoma cap before having sex

covering the appliance with a satin or cotton cover (if the feel of the appliance against your skin is a distraction during sex)

keeping your sense of humour: embarrassing mishaps often occur during sex, whether or not you have a colostomy

You should avoid having anal sex (if the rectum hasn't been removed) after a colostomy, because this can lead to painful tearing and bleeding. You should also avoid using the stoma itself for penetrative sex, because this can seriously damage it.